Youth with special health care needs receive the services necessary to
make transitions to all aspects of adult life, including adult health care,
work, and independence.

While rapid advances in medical science have enabled nearly all children
born with special needs to reach adulthood, youth with special health care
needs are much less likely than their non-disabled peers to finish high
school, pursue post-secondary education, get jobs, or live independently.
Few coordinated services have been available to assist them in their transitions
from school to work, home to independent living, and child and family-focused
care to adult-oriented care. Transition planning must begin early in order
to move children and families along in a developmental fashion. One of the
greatest challenges in planning is how to make a successful transition from
the pediatric to adult health care system for youth with special health
care needs. Health care professionals, on both the pediatric and adult sides,
may lack the training, support, and opportunities they need to promote the
development of youth with special health care needs as partners in health
care decision-making and policy formulation. Some adult health care providers
may not be prepared to treat patients with complex medical conditions that
begin in childhood. The challenge remains to improve the system that serves
youth with special health care needs while simultaneously preparing youth
and their families with the knowledge and skills necessary to promote self-determination,
wellness, and successful navigation of the adult service system.

This outcome was evaluated for CSHCN 12–17 years of age using several
questions: whether doctors had discussed the shift to adult providers, whether
doctors had discussed the child’s changing needs as he or she approached
adulthood, whether anyone had discussed insurance coverage in adulthood,
and whether the child was usually or always encouraged to take responsibility
for his or her health. This outcome was achieved for 41.2 percent of adolescents.

Adolescents whose conditions affected their activities usually, always,
or a great deal were considerably less likely to achieve this objective
than those whose daily activities were never affected (30 percent versus
52 percent). Children living in poverty were only half as likely as high-income
children to receive adequate transition services (24 percent versus 54 percent).

Information on this page can be found in the print version of The National
Survey of Children with Special Health Care Needs Chartbook 2005-2006.
Suggested citation: U.S. Department of Health and Human Services, Health
Resources and Services Administration, Maternal and Child Health Bureau.
The National Survey of Children with Special Health Care Needs Chartbook
2005–2006. Rockville, Maryland: U.S. Department of Health and Human
Services, 2008.